Re: Lumbar puncture advice

[Guest guest]

RH

I haven't had a lumbar puncture, but have had spinals for 4 surgeries which

are basically the same. I was told I had to be flat for 8 hours, but when

done as an outpatient (most are) that isn't possible. I have and have not

had the headaches. I had a spinal for my last biopsy and the headache was

worse that the pain of the two incisions.

They can do what is called a blood patch. They take a bit of you blood (from

your arm) and inject it in the same area as the puncture. It clots and stops

the leakage of spinal fluid.

I know that lumbar punctures are done as a part of a mito work up,

especially if other things aren't clear. They look for lactic acid for one

thing. I'm not sure what else, but someone else probably does.

Good luck! Sitting up and leaning over is better than lying on you side.

They get more space to get between the vertebrae.

laurie

> From: rakshasis@...

> Reply-To:

> Date: Sat, 30 Mar 2002 17:45:32 -0500

> To:

> Subject: Lumbar puncture advice

>

> I am " looking forward " to a lumbar puncture (spinal tap) and I was

> wondering if there is any good advice out there on avoiding a severe

> headache after the procedure. I have a high pain threshold, but I also get

> really bad sinus headaches so want to avoid a headache if at all

> possible. I heard about lying down for a certain amount of time after the

> procedure, but I don't know if it works or how long to lie down (minutes,

> hours?)

>

> This is something that is usually done same-day, right? The few people

> I've talked to have had only one done, and they weren't really happy with

> what happened, although they had the procedure as children so that may be

> part of it. Of course, my other everpresent question is " does it help

> diagnose a condition or change the treatment plan? " I get the impression

> that in my case it will be done to rule out MS (rule it out more that is)

> and rule out vasculitis, but I don't have any idea if they would be able to

> identify mitochondrial disease if it is present.

>

> Take care,

> RH

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

>

[Guest guest]

<I am " looking forward " to a lumbar puncture (spinal tap) and I was

wondering if there is any good advice out there on avoiding a severe

headache after the procedure. I have a high pain threshold, but I also get

really bad sinus headaches so want to avoid a headache if at all

possible. I heard about lying down for a certain amount of time after the

procedure, but I don't know if it works or how long to lie down (minutes,

hours?)

This is something that is usually done same-day, right? The few people

I've talked to have had only one done, and they weren't really happy with

what happened, although they had the procedure as children so that may be

part of it. Of course, my other everpresent question is " does it help

diagnose a condition or change the treatment plan? " I get the impression

that in my case it will be done to rule out MS (rule it out more that is)

and rule out vasculitis, but I don't have any idea if they would be able to

identify mitochondrial disease if it is present. RH>

RH,

had a lumbar puncture when they were trying to rule out MS with her.

I'm hoping she'll jump in with her experience but I do know that the results

showed high acid levels. At the time, we knew nothing about mito. The

doctor's were puzzled.

Now we know why the reading showed high acid.

When are you having the test. I'll try to get to give you some advice

on it.

She doesn't always read the mail.

Alice

[Guest guest]

My advise is if you have a headache BEFORE you leave the hospital after

the LP, then stay and have the blood patch, otherwise you are in for

DAYS of a bad headache that meds will not touch.

LilSis

[Guest guest]

I had one done in 1997 as a part of a overall series of tests to see what

level my MELAS was at. They did the genetic blood screening in January and

I went thru a series of tests in April.

I took the advice of everyone and just went to sleep on my back. I was in

the hospital overnite and they did it at 6:30 pm so that was no problem. I

had no problems. They found that the lactic acid in the fluid was like many

many thousands times more than a " normal " person.

Basically it was done to determine what kind of treatment we were going to

persue--DCA (still available at that time) or vitamin cocktail only or

nothing because of the insurance and cost issues. I had only the numbness

on the top of my left foot and a few blackout episodes thru my 30 years of

life.

Janet

Lumbar puncture advice

> I am " looking forward " to a lumbar puncture (spinal tap) and I was

> wondering if there is any good advice out there on avoiding a severe

> headache after the procedure. I have a high pain threshold, but I also

get

> really bad sinus headaches so want to avoid a headache if at all

> possible. I heard about lying down for a certain amount of time after the

> procedure, but I don't know if it works or how long to lie down (minutes,

> hours?)

>

> This is something that is usually done same-day, right? The few people

> I've talked to have had only one done, and they weren't really happy with

> what happened, although they had the procedure as children so that may be

> part of it. Of course, my other everpresent question is " does it help

> diagnose a condition or change the treatment plan? " I get the impression

> that in my case it will be done to rule out MS (rule it out more that is)

> and rule out vasculitis, but I don't have any idea if they would be able

to

> identify mitochondrial disease if it is present.

>

> Take care,

> RH

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

>

[Guest guest]

RH,

There are some abnormalities that can be detected in the spinal fluid

which may be possible indicators of an underlying mitochondrial

disease. Some people have high Lactic Acid levels in their

cerobrospinal fluid while in others it is normal. Some have elevated

protien while in others this is normal. These tests can not

definitively diagnose mitochondrial disease, but rather give another

piece of the puzzle that can point doctors in the right direction.

Since I had a difficult time with Lumbar Punctures in the past, the

doctors decided to not even let me move for 3 hours after my last one.

I was kept flat on my stomach and could not even turn my head.

Although staying still for that long was a little uncomfortable it was

worth it when I didn't get the spinal headache. The headache doesn't

happen to everyone though. I seem to be prone to it and the doctors

refuse to do the blood patch for me. Keeping very still seemed to

help me.

I hope that the procedure goes well for you and that the spinal

headace does not come your way. Good luck!

> <I am " looking forward " to a lumbar puncture (spinal tap) and I was

> wondering if there is any good advice out there on avoiding a severe

> headache after the procedure. I have a high pain threshold, but I

also get

> really bad sinus headaches so want to avoid a headache if at all

> possible. I heard about lying down for a certain amount of time

after the

> procedure, but I don't know if it works or how long to lie down

(minutes,

> hours?)

>

> This is something that is usually done same-day, right? The few people

> I've talked to have had only one done, and they weren't really happy

with

> what happened, although they had the procedure as children so that

may be

> part of it. Of course, my other everpresent question is " does it help

> diagnose a condition or change the treatment plan? " I get the

impression

> that in my case it will be done to rule out MS (rule it out more

that is)

> and rule out vasculitis, but I don't have any idea if they would be

able to

> identify mitochondrial disease if it is present. RH>

>

>

>

> RH,

>

> had a lumbar puncture when they were trying to rule out MS

with her.

> I'm hoping she'll jump in with her experience but I do know that the

results

> showed high acid levels. At the time, we knew nothing about mito. The

> doctor's were puzzled.

>

> Now we know why the reading showed high acid.

>

> When are you having the test. I'll try to get to give you

some advice

> on it.

> She doesn't always read the mail.

>

> Alice

[Guest guest]

I have had one and have assisted with many as I am a nurse. Drink LOTS of

water before and immedietaly after. I layed flat for 30 minutes and drank

water wht whole time I was flat. I did't have any headache and i usually

have headaches generally. I have NO pain-theshold and I did't mind it.

Good luck!

>From: rakshasis@...

>Reply-To:

>To:

>Subject: Lumbar puncture advice

>Date: Sat, 30 Mar 2002 17:45:32 -0500

>

>I am " looking forward " to a lumbar puncture (spinal tap) and I was

>wondering if there is any good advice out there on avoiding a severe

>headache after the procedure. I have a high pain threshold, but I also get

>really bad sinus headaches so want to avoid a headache if at all

>possible. I heard about lying down for a certain amount of time after the

>procedure, but I don't know if it works or how long to lie down (minutes,

>hours?)

>

>This is something that is usually done same-day, right? The few people

>I've talked to have had only one done, and they weren't really happy with

>what happened, although they had the procedure as children so that may be

>part of it. Of course, my other everpresent question is " does it help

>diagnose a condition or change the treatment plan? " I get the impression

>that in my case it will be done to rule out MS (rule it out more that is)

>and rule out vasculitis, but I don't have any idea if they would be able to

>identify mitochondrial disease if it is present.

>

>Take care,

>RH

>

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[Guest guest]

Ive had several of these. I learned that i dont get the massive headache it

causes if they have me sit up and curl forward to insert the needle then have

me lie down slowly to collect the spinal fluid. the first time they did it

they had me lay down as they were doing this and it caused me so much pain

during and after for 3 days. with the sitting up (hunched over) then laying

down after theyve inserted the needle then they had me stay laid down for 45

mins to an hour before i left and told me to lay down at home for the rest of

the day (id have it done usually late morning). Ive had lumbar punctures done

maybe 6 times or so and only the first one and one other caused me to have

the massive headache (the other one i think was because i had already been

feeling pretty bad that day with a migraine and i think it just made it

worse.)

Also, the reason they did this so many times was that the first time

they did it they found that my spinal fluid pressure was extremely high. They

felt this was probably from a pseudotumor cerebri and if they removed some

fluid it would help with my headaches and vision problems because i had high

intercranial spinal fluid pressure. They also said that my lactic acid was a

bit high and 2 proteins they tested for were at a boarderline level and

needed to be watched. 4 of the spinal taps they did was just to remove the

pressure, i think its only been tested 3 times for specific things, i know

that 2 of the tests were about the same then one the levels that were high

had lowered. Also they said my red count was fairly high (sometimes its high

because of a bleed from the tap but they said mine was higher than normal for

it), this only happened in the last one i had. They didnt seem to worried

about the red blood count or the lactic acid much, just made the comment on

they were high but nothing else. then they seemed alittle concerned about the

proteins but in the last one they had gone down some so they kinda left it

be. The ones i had done to lower the pressure stopped when i started seeing a

new neuro, told her about it and she got the results and seemed to not be

worried about it, just said might do one in the next yr to see how i was

(last one done was august of last yr). I've gotten a new neuro since then and

started seeing a neuromuscular specialist also and told them about the spinal

fluid pressure thing but not the other stuff, had forgotten about it, im

gonna mention it next time i see them though and see what they have to say.

let us know how yours go!

take care,

adrienne

[Guest guest]

RH,

I just had a lumbar puncture done about 3 or 4 weeks ago, whenever I was in

the hospital last. I had to lay still in the same position for an hour

after the procedure. Since I was being admitted that night, the doctor

wanted me to stay flat all night, which was impossible because of my acid

reflux, but I was still " pretty flat " . I did not get the bad headache due

to the LP. At that time, they were looking for meningitis, so I am not sure

if they did any other tests to the fluid.

Smiles,

a

><I am " looking forward " to a lumbar puncture (spinal tap) and I was

>wondering if there is any good advice out there on avoiding a severe

>headache after the procedure. I have a high pain threshold, but I also get

>really bad sinus headaches so want to avoid a headache if at all

>possible. I heard about lying down for a certain amount of time after the

>procedure, but I don't know if it works or how long to lie down (minutes,

>hours?)

>

>This is something that is usually done same-day, right? The few people

>I've talked to have had only one done, and they weren't really happy with

>what happened, although they had the procedure as children so that may be

>part of it. Of course, my other everpresent question is " does it help

>diagnose a condition or change the treatment plan? " I get the impression

>that in my case it will be done to rule out MS (rule it out more that is)

>and rule out vasculitis, but I don't have any idea if they would be able to

>identify mitochondrial disease if it is present. RH>

>

[Guest guest]

Something I meant to mention that helped for me during LP's that weren't

a problem, was to have it done with fluoroscope. I have a rather sever

curvature of the spine that I wanted to make sure they could SEE, before

they stuck that needle in.

(LilSis)

a Koch wrote:

>

> RH,

> I just had a lumbar puncture done about 3 or 4 weeks ago, whenever I was in

> the hospital last. I had to lay still in the same position for an hour

> after the procedure. Since I was being admitted that night, the doctor

> wanted me to stay flat all night, which was impossible because of my acid

> reflux, but I was still " pretty flat " . I did not get the bad headache due

> to the LP. At that time, they were looking for meningitis, so I am not sure

> if they did any other tests to the fluid.

>

> Smiles,

> a

>

> ><I am " looking forward " to a lumbar puncture (spinal tap) and I was

> >wondering if there is any good advice out there on avoiding a severe

> >headache after the procedure. I have a high pain threshold, but I also get

> >really bad sinus headaches so want to avoid a headache if at all

> >possible. I heard about lying down for a certain amount of time after the

> >procedure, but I don't know if it works or how long to lie down (minutes,

> >hours?)

> >

> >This is something that is usually done same-day, right? The few people

> >I've talked to have had only one done, and they weren't really happy with

> >what happened, although they had the procedure as children so that may be

> >part of it. Of course, my other everpresent question is " does it help

> >diagnose a condition or change the treatment plan? " I get the impression

> >that in my case it will be done to rule out MS (rule it out more that is)

> >and rule out vasculitis, but I don't have any idea if they would be able to

> >identify mitochondrial disease if it is present. RH>

> >

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>

[Guest guest]

I had the lumbar puncture done a couple of months ago. I was afraid

because of all the horror stories I heard. The doctor stuck me 3

times while I was in a fetal position but I had too much degeneration

in my spine they had to send me to the hospital to have it done with

a machine that showed what they were doing. I stayed flat for 1 hr in

the hospital. I laid down in the car going home and stayed in bed the

rest of the day on my back. I didn't have any problems with getting

the headache. I probably over did the laying down but I wasn't taking

any chances. You will be fine. oh yes, drink alot of water before and

after.

God bless,

Belinda

> I am " looking forward " to a lumbar puncture (spinal tap) and I was

> wondering if there is any good advice out there on avoiding a

severe

> headache after the procedure. I have a high pain threshold, but I

also get

> really bad sinus headaches so want to avoid a headache if at all

> possible. I heard about lying down for a certain amount of time

after the

> procedure, but I don't know if it works or how long to lie down

(minutes,

> hours?)

>

> This is something that is usually done same-day, right? The few

people

> I've talked to have had only one done, and they weren't really

happy with

> what happened, although they had the procedure as children so that

may be

> part of it. Of course, my other everpresent question is " does it

help

> diagnose a condition or change the treatment plan? " I get the

impression

> that in my case it will be done to rule out MS (rule it out more

that is)

> and rule out vasculitis, but I don't have any idea if they would be

able to

> identify mitochondrial disease if it is present.

>

> Take care,

> RH